Can anyone comment on my current situation - using T3 only.

[Florence-Ann]

Happy New Year and hopefull a year with improved thyroid health, to everyone. I have posted on numerous occasions about my resistance to all thyroid meds but after several years of trying all routes I have recently seen a different endo who has given me some hope. He did actually surprise me by questioning me at some length about how I actually felt. He did an anti-body test which came back positive and he has put me on T3 alone but by starting really slowly - I have taken this before but could not tolerate it - am currently taking only 20mcg each day, in two doses - but he has also added a small daily dose of diazapam to calm me down and has suggested that if i start to react to the T3, to leave it off for a day or so. I was not very confident at his suggestion but have gone along with it and so far I am managing to tolerate the T3 (for a couple of months now) and do feel somewhat better and the worst side effects which I had before (paplpitations, anxiety and pins and needles in my arms, legs and worst of all in my head) have not happened. I have tried leaving off the Diazapam as I am not really comfortable with this, but then i start to get the old probems again. Has anyone else had this kind of experience? I did not think to ask him if the Diazapam would be necessary permanently which I will do at my next appointment! Is anxiety simply a part of being hypothyroid? I would be very interested to hear if anyone else has had a similar experience or simply if you have a comment! Best wishes to everyone! love Flo xx

[Clutter]

Florence-Ann, I think it's unlikely any doctor would see Diazepam as a permanent prescription. Yours appears to be using it as a temporary crutch to enable you to tolerate T3. As your tolerance increases your Diazepam dose will probably be reduced. Anxiety is a hypothyroid symptom and should resolve once you are optimally medicated.

As RFU suggests, ask your endo or GP to check your ferritin, vitD, B12 and folate as deficiency/low levels are common in hypothyroid patients and correcting them can make a lot of difference to wellbeing.

[thelady2003uk]

Hi, Could I ask Reallyfedup123 a question please, tried to PM you but can't do it since they altered the format of this site. am having the same trouble as Florence-Ann in relation to thyroid medication resistance. You have written that Vit D, Vit B12, Ferritin and Folate should all be hallway in the range but I cannot tolerate supplements as I have a corn allergy so basically my Endo doesn't know what to do with me. I have been treated so badly that I have been forced into having to complain about him and in response to this he diagnosed me with somatising disorder last month (even though he has confirmed that I have hypothyroidism). I have Vitamin D annually by injection and B12 every three months so those are both ok, but folate is very low at 2 (ref range is not written on my blood tests results for this but all of my blood reports state "suggests deficiency") and ferritin is 45 (11 - 295) To cut a long story short I would just like to be able to show my Endo some evidence that low levels of folate and ferritin can affect the thyroid but I have looked on the WHO and NICE guidelines and can find no proof of this, so please could you let me know where you found this info so I can print it off and stick it under my Endo's nose and tell him to stick his Somatoform diagnosis where the sun doesn't shine. As you can appreciate I am extremely concerned at having somatising disorder written on my medical notes as it is already affecting the way that other doctors talk to me (very condescendingly) and I want to get this removed as a matter of urgency so any help you can give would be greatly appreciated. Many thanks and a Happy and Healthy New Year to you all!

[sulamaye]

Get a saliva stress test to look at cortisol. If low it prevents uptake of meds and produces odd symptoms. It costs about £70

[thelady2003uk]

Hi, Reallyfedup123. I never knew google scholar existed I have been looking on it since you contacted me and found some very interesting things that will support me in my battle with the endo. Thanks very much for your help, much appreciated. Take Care X

[stuartwwhouse]

I had a bout of severe anxiety at 22 which was completely unexplained and then it went away again after suffering for about 8 months . It returned again for no reason at 30 but was a bit worse than before

I was under a different Gp the second time and he did a full thyroid panel and discovered I was quite hypo and Hashis .For about 2 years I was on low thyroxime doses 25mcg , then 50 until until I insisted on an Endo referral. I was prescribed T3 alongside my T4 but it didn't really do a lot. In the end I have gone T3 only and read Paul Robinsons book "Rexovering with T3" and the follow up "CT3M handbook" and I am dosing my T3 with his help in the facebook group RWT3

I can't recommend it enough - I was given diazepam and SSRIs to help with the anxiety but since adequate T3 dosage I haven't had a single episode and don't need anything but appropriate thyroid medication

I suggest you have a look , it may be the best thing you ever did ! It was for me!

Good luck

[Florence-Ann in reply to stuartwwhouse]

Thank you (and everyone else who has made suggestions in response to my post the other day). I have listed all your ideas and am thinking if, how and in what order to follow them up! The very fact that so many of you have found yourselves in a similar situation is, on the one hand very sobering but also in a strange way, quite a comfort - it helps me to understand that I am not peculiar, going mad or simply a whimp! It can be so easy to get really fed up with it all and to stop trying. Anyway I am not going to do that!!! I think the first step is to find Paul's book which I am sure i bought quite a while ago but it was when I was mentally not in a good place and although I read it, I obviously did not take it in and now can't even remember where I put it!! You would expect it to be in the bookcase really wouldn't you but NO. It must be somewhere so I am off to do a search and if that proves useless I shall buy another copy. I shall then probably find the first one in the most unlikely place knowing me!! You never know it might even prompt me into having a sort out of all the disorganised places in the house. One can only hope! I just need the energy!!

Thanks again..............Love Flo x

[Marz in reply to Florence-Ann]

If you cannot find your book - there is loads of info on his website rwt3.com including the Blog....

Good luck on your journey....

[Florence-Ann in reply to Marz]

Thanks Marz - will do. It is easier than having a clear out. I'll save that for when I am really desparate!! Thanks again for your rapid response - I am making you sound like an emergency service. Just as appreciated though!! love Flo.

[Marz in reply to Florence-Ann]

It's been snowing here today and tiz freezing - in Sunny Crete - how can that be ? So no afternoon doggie walk - computer it is

[Florence-Ann in reply to Marz]

Same here - except much more usual. It is just damp and miserable. Sorry that the doggie walk has had to be missed but at least I gained your response. Strange but as I was reading your reply my husband came into the room and said we should get wrapped up and go for a walk but I just screwed my face up! Sadly, we recently lost our last dog and are still finding it very strange not having an incentive and a big black lovely doggie face giving us a push to get up and go! I am now feeling guilty and will do just that!! Flo x

[Marz in reply to Florence-Ann]

....so sad to read about your doggie. Can quite understand how the motivation lessens when your 4 legged friend isn't there to become excited at the sight of coats and boots ! Our dog had her first experience of snow this morning The last heavy fall we had was in February 2004 and she was abandoned in our garden at around six weeks - in the July. She has also been Hypo for several years and is improving all the time So that's all three of us in this house !

M x

[Marz in reply to Florence-Ann]

...just had a thought about the low mood on re-reading your thread ! What are your levels of B12 and VitD ? Apologies if you have already posted about this. Also with there being more T3 receptors in the brain than anywhere else in the body - the addition of T3 should be a bonus. I am a T3 only gal ! x

[Florence-Ann in reply to Marz]

Sorry I didn't reply immediately - went for that walk which we actually enjoyed once we had adjusted to the damp. Your doggie pal sounds as if he landed in the best possible place he could. They give us so much that anything we give to them in return is worth all the effort! Re the Vit D and B12, I don't think I have ever had them tested. Is it OK to just buy these and take them without supervision. I don't have an appointment with the endo for three months so I can't ask until then. I have been taking the small dose of T3 for about 3 months now but it seems to build up after that period and I am starting to get really anxious again even with a small dose of Diazepam which I hate taking. Shall have to start working through Paul's book.

[Marz in reply to Florence-Ann]

b12deficiency.info/signs-an...

Low B12 can be linked to low mood. Again the problem is with the testing and the ranges. GP's think if you are in range all is well when in fact you need to be around the top of the range - 800/900. No harm in self medicating with Jarrow 1000mcg B12 Methylcobalamin from Amazon. Any not needed by the body will be excreted. You need to take a GOOD B complex with the B12 to keep all the B's in balance. Also take some Folic Acid from time to time as that also works with the B12 in the body. There should be some in the B Complex but not enough. Once self-treating there is no point in being tested as the results will be skewed. The above site will tell you everything you need to know about B12 and some.... In japan the range starts at 500 - in the UK - around 180 and the Docs think that is just fine.

Important to be checked for VitD - City Assays in Birmingham have a website and do home testing for about 28GBP's. The reason for testing is the dose required is based on your results. I take 10,000IU's daily - quite a lot but I have Crohns as well as Hashimotos. After living in the sun for years - hubby and I both tested insufficient.

Whilst you are at it - have the Folate - Iron - Ferritin also tested. Your GP should/can organise these tests for you. Also there is private testing through Thyroid UK - on their website - with Genova or Blue Horizon.

I have T3 here in Crete - each tab is 25mcg - and I take two a day. Have increased it to another half around 5pm when I feel weary ! The second 25mcg I take at bed-time....

I think if you have been taking 20mcg over the day for three months - it may be possible for you to take an extra 10 somewhere in the day...to see how things go. 20mcg is quite low and only equivalent - roughly - to 60/65 mcg of T4....

Supplements to be taken away from T3 - around 4 hours afterwards. Makes timing of the T3 difficult so I do not always adhere to it....just better if you can.

Sorry lots of info....I didn't expect you to reply quickly - always take your time. I am off to bed now as we are two hours ahead....

[Florence-Ann in reply to Marz]

Will read your suggested website about B12. Have just remembered that I did have the tests you mentioned last year but just accepted my GP's comments afterwards - which were that everything except the TSH was 'normal'. Having just retrieved the copy of the results from my pile of Thyroid info, I notice that under the heading B12/Folate/Ferritin are the words Abnormal - No action. There is an exclamation mark by the words Serum Folate with a reading of 17.1 ug/L and 240 - 14.60 ug/L printed in bold. Does that mean anything to you as it certainly doesn't to me!! Any little clue would be much appreciated. I shall now try a little more research. Incidentally the low dose of T3 is simply that I cannot tolerate any more than that before I start to shake, get pins and needles like knives in my head and my whole nervous system goes into overload!

[Marz in reply to Florence-Ann]

...like me you have probably read on here that when the Ferritin - Folate - Iron - B12 - VitD etc. are low in range - then the uptake of thyroid hormones is in someway compromised.

Please try to write the results as they appear on your sheet as I am afraid they do not make much sense to me. The word ABNORMAL does ring alarm bells - but am not sure which it is - B12/Ferritin/Folate ?

If you had the above tests done a year ago then I would suggest you have them again and then do NOT accept that anything is normal unless you think so yourself. I know it's a lot to take in - but just baby steps and tick the boxes as you go

Remember you have Hashimotos too - so have you read up on that - as that too can cause problems with dosing and health generally. Have you considered going gluten free - apologies if you are already

Off to take my yoga class - so must stoke up the woodburner

[thelady2003uk]

So I have found out thank you very much. They say you learn something new every day and today it is definitely true! Thanks again.

[belwom]

Florence-Ann if you're allergic to maize or corn, ask for liquid or sublingual supplements at your health food shop or pharmacist. Vit B12 and D3 for example are available in sublingual spray form in the 'Better You' brand from Holland and Barrett.